There is much money in the pain and drug industry. Ethics and the recipients of these drugs do not factor into the bottom line. Profit and Loss Statements mean percentage increases at any cost. It is sad that chronic pain patients are made to feel like drug addicts and treated in a most callous way.
I had a psychologist who once said ‘people like me, were ‘CASH COWS’. At $180 a session, his treatment at times involved closing my eyes and focusing on the ocean. Visiting him for six weeks was a government requirement in order to access S8 pain meds (Opiods). My meds cost around $400 a month. At the time Lyrica was not subsidised by the Australian Government and had only recently come on the market. I was paying $140 a month and once I paid $180 for a pack of 56 x 75mgs of Lyrica. Additional costs included acupuncture, massages, GP bills and specialist bills. My electric pain was at T 6/7 region and wearing a bar was dreadful.
Some Pain Clinics exploit vulnerable patients. They started to resemble Spas for the wealthy. A clinic I attended introduced laser therapy, with scented candles. I was attended by a sweet lady who had no idea how to use the laser. Cost, another $80.
The exercise routines were two years too late because by the time some doctor thought that perhaps this woman was truly incapacitated by pain in her spine at T6/7 I had progressed from acute to chronic pain.
I had attended this particular pain clinic since 2005. In 2011, the pain specialist decided to introduce a course for chronic pain patients.. Before being treated by him you were now required to spend $300 on a course on Chronic Pain and no rebates. The presenter was not a medical professional but a mild pain sufferer.
For the first two years my doctors failed to believe or act on my pain effectively. I sought validation. My then GP thought I was suffering from somatic pain. I took scans, x-rays, MRIs, you name it, all to no avail other than my the lumber spine and scoliosis that I considered simply pain. What I could not cope with was the neuropathic pain at T6/7. I used to think it was like giving birth every day. I read clinical reports and papers on chronic pain, I read clinical trials on the effects of B12 and D3 on spinal pain. I wanted a scientific answer 'mechanical pain' simply didn't cut it. I was so over hearing that ‘pain is subjective’. If your pain causes you to pass out when you stand up from your desk or you need to stop your car on route to work, and lay in your back seat while strangers stop and call for an ambulance. All this despite having taken my daily meds. It’s hardly subjective. To this day, I am unable to sit or stand for too long.
An infrared scan was another initiative introduced to my pain clinic. The radiologist indicated in a shocked voice that I had ‘chronic regional pain syndrome’ the worst she had seen. No doctor had ever mentioned that to me before or after. That scan cost $199 and other than chronic levels of red markers all over my body the scan indicated possible future issues with my right breast, and it happened exactly as predicted. The nine biopsies they did may have had something to do with my ET. The scan also indicated a small blockage in a small vein at T6/7, a possible small clot. Has anyone heard of prolotherapy? I paid well for those ridiculous treatments too. Another pain clinic initiative.
In 2008, I was so desperate, I researched back doctors with a pain specialisation. I went to Melbourne where I remained for 5 weeks. I had a peripheral nerve simulator inserted at thoracic T6/7 level. I never changed the setting or turned the machine off. Nearly four years later, I lost a number of contacts and the machine ceased to function effectively. I was unable to find someone who could repair it, so my Doctor encouraged me to have it removed. That peripheral simulator cost about $42,000. Mostly paid for by my insurance company. I would pay for it again. I loved that machine as it reduced the benchmark of the pain. It was hundreds of times more effective than the tens machines. I halved my Oxycontin dose overnight without any withdrawal symptoms. I remained on the Lyrica.
I read the clinical trials on Lyrica when it was first prescribed. The trials indicated that the daily dose for chronic neuropathic pain was 450mg. I experimented and listened to my body until I found a dose that worked for me. I am now on 150mg once a day but in the early days I was on 1,200mg daily. I continue to have occasional electric attacks in my thoracic region but I have a range of meds I can take to try to control the unbelievable pain. I have had two dreadful night attacks this week. Very hot showers where I lay on the shower floor, increase my meds and a hot water bottle filled with boiling water are my saviour.
I gave up work in 2011 as a result of my condition. My new Doctor took me off the Oxycontin and stared me on Tramadol, a much softer and more effective pain medication than Oxycontin. I now take 200mg long acting Tramadol, 150mg Lyrica, 100 Aspirin and 500 Hydrea (oral chemo). I also have Rivotril that I take when the thoracic pain starts to spark up. The pneumonia that went undiagnosed for 9 months really messed me up. I still struggle to do anything active. I am now walking with my stick; it helps but I seldom leave the house except to visit my ageing parents.
I have regular blood tests and over the years my platelet count has sat around the 600 mark, when my platelets reached 1,000, I started oral chemo. My platelets are now at 500+, in the four years on Hydrea I am yet to reach the normal range for platelets.
No specialist during my chronic pain journey mentioned the high platelet count. Yet the high count was demonstrated on every blood test. I am talking years. When I questioned my then GP on it, she dismissed me. I continued to seek answers for my pain, I was ruthless. I even purchased medical books on back pain. never realising that I had been living with a chronic blood cancer. I knew from my own research that I had Thrombocytosis’ but I never researched Essential Thrombocytosis. It was only following a move interstate to QLD and finding the most remarkable doctor who explained that my high platelet count could lead to Acute Myeloid Leukaemia (AML) and I needed to have it looked at. So I conceded to a bone marrow biopsy. The results indicated Essential Thrombocytosis Jak2 mutation. A chronic blood cancer that forms part of the Myeloproliferative Neoplasms (MPN). It was not something I concerned myself with despite having many of the classic symptoms over the years. Although because I have had it for so long the symptoms are far more pronounced.
It's too important and necessary for doctors, drug companies, researchers and those in the medical field to access grants and other funding regardless of any conflicts of interest. I am sure we all remember the thalidomide story! A close cousin of Thalidomide, lenalidomide came onto the Australian market around 2007. It was a gift form God for those who had tried every medical protocol for conditions like Multiple Myeloma, and Amyloidosis and failed. Including stem cell transplants. Amyloidosis patients did not qualify for this treatment for free unless the condition was secondary to the Multiple Myeloma. So they were required to buy the drug at a cost of around $80,000 for a six month supply. The supplier was kind enough to offer the following 6 months free. Patients died well before then.
Lenalidomide is now available under the Australian PBS scheme and costs around $36. There are now newer derivatives of Thalidomide or Lenalidomide drugs used to treat some blood disorders such as Amyloidosys and Multiple Myeloma. Medical research brings hope. I take my hat off to the scientist who work in this field.
I am passionate about medical research but somewhere along the way people must come before profits. I had never heard of the word "Oxycontin" when I it was first prescribed. So, I researched the clinical trials. As it was a new drug intended for short term use there was no data on the long-term side effects of taking this drug. However, when I expressed my concerns about the Oxycontin my rheumatologist informed me in a stern manner that I would be on it for life so get used to it. When Oxycontin first became available, incentives were offered to doctors who believed that it was the best new treatment for chronic pain sufferers. What a horrific drug! And so it goes …
Living with chronic pain is difficult, it affects one's personality with the side effects of the medication causing periods of rage. Those who suffer the most are families. How does one apologise to them?
Anna
living with chronic pain inside and out
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